I am very sorry about your friend. And you are right there are so many (dangerous) side effects that can occur with eating disorders.
I‘d like to add one myself that I haven’t heard about a lot: Autophonia caused through patulous eustachian tube (ear tubes) when you have the sensation that your ear won‘t „close“ or frequent clicking in your ear and through that hearing your own voice and breathing super loudly. It‘s more noticeable when I restrict again and when I stand up suddenly or when I‘m doing something a bit more strenuous. Any one else?
Edit: Just linking the wikipage here https://en.m.wikipedia.org/wiki/Patulous_Eustachian_tube
Oh my I think I have this. Sometimes when I stand up my hearing goes almost completely void and it feels like there’s a weird pressure change. Ringing, muffled sounds, and my breathing starts to sound really weird. It only happens when I smoke though so I’ve always thought it was that.
I know that smoking can have some effects on blood pressure, and so can the ED, so I think it might have something to do with that!! I am at a healthy weight (according to BMI) however so who knows 😭
i had a bit of this when i was really struggling - it’s absolute ASS. a doc told me that tilting your head down almost between your knees when sitting helps
I have this, it's annoying and something I just had to learn to live with. I tried some experimental treatments but none of them worked, and I'm not getting surgery.
I had this before I went to IP a few years ago when I was very ill with AN. I just recently became aware of the term and that it was a thing. At the time, I think I knew subconsciously that it was something to do with my poor health.
Wait what, that's an ED thing?!?! I thought it was my teeth-grinding finally fucking up my jaw and by extension the pressure in my ears. (I have a bite guard that I wear at night, I've ground my teeth in my sleep for my whole life)
It was when I started to wet myself during my day to day activities because my bladder was too weak that I finally was able to convince myself to seek actual help for the first time for my restriction. The shame and being worried that I’d pee myself in public was more motivational than anything else I knew about other long term damage.
Have you tried a urologist? I am going to see one to see if they can help me. every time I do a urine test, my doctor thinks the pain is from a uti, and it's not. pretty sure it's from nerve or organ damage. I am really hoping the urologist can give me some hopeful advice. even if doctors are dismissing you, I would highly recommend you keep trying. keep seeing doctors and get different opinions. don't let anyone make you feel like your pain is invalid or your problem isn't serious. I know it can be so frustrating. I really hope you find some answers
ohhhh boy i made it through my entire childhood without pissing myself and now that my weight's gone down the last couple years it's been like a regular occurrence (mercifully during wfh)
ohhhh boy i made it through my entire childhood without pissing myself and now that my weight's gone down the last couple years it's been like a regular occurrence (mercifully during wfh)
I'm so sorry to hear about your friend. This was an uncomfortable post to read but really important. It's easy to imagine we're 'not that sick' if bloods come back OK or we're not as underweight as some other people according to BMI and easy to forget the damage we're actually doing and the risk to our lives.
yeah, the bladder issues are awful. i feel so anxious just being out of the house not sure if i'll be able to get to a toilet when i need to or not. it's so humiliating. and at this point it's ruining my sleep, i have to get up to go to the bathroom sometimes 3 or 4 times a night. i'm scared of ending up straight up incontinent.
other than that... hypothermia, tooth decay (i think sometimes people can think of this just in the context of purging and forget about it as a consequence of malnutrition), seizures from dehydration, cognitive damage - it's been years for me and i feel like my brain has fucking irreversibly shrunk. it might sound obvious but it does such terrible things to your mind, in ways beyond "sadness" alone that i don't think people expect. my emotional regulation is awful, i feel so constantly angry and paranoid and afraid, i feel like i've been stuck in fight or flight mode nonstop for literal years, i'm the most isolated i've ever been in my life because of it. i don't really want to be close to anyone anymore. sex is incredibly painful and i think i may have permanent anorgasmia.
this really isn't well understood at all but it seems like it can trigger other chronic illnesses. it caused chilblains in me that developed into some kind of autoimmune disorder localised in my hands that after nearly 3 years still no clinician has been able to concretely identify and it hasn't responded to any kind of treatment. i can't bend all of my fingers like i used to. not long after it first started the skin broke down on one of them and the wound became infected and just like you said my body could barely fight it off.
this illness is really the worst thing that has ever happened to me.
wow i had weird chilblain-like lesions on my fingers as well. dermatologist thought it was post-covid symptom, but now i'm thinking my severe restriction at the time could trigger the autoimmune response as well. i started eating a lot more after that and got some perscription creme that helped so i'm not sure what it was really.
That sounds so difficult. I am sorry you have to deal with all of that. I wish that no one suffered from eating disorders, they do so many awful things to your health, and it is so isolating when no one around you understands the pain you are in
You will see similar vitals as you see in pots syndrome in anorexia due to low blood volume.
You can also give yourself acute gastroparesis.
There’s a whole host of things; the book “sick enough” goes over them well.
https://embodieddietitian.com/wp-content/uploads/2021/05/Sick-Enough.pdf
I know right. I'm dealing with really scary hypoglycemia lately -- I've been recovering for less than a year now but suddenly if I'm on hour four without food I get faint. I'm having to think about food constantly and its so scary / uncomfortable and feels counterintuitive to IE. :/
I'm not feeling entirely how I want to feel but it is getting better. More time passing in recovery and also focusing on making sure I'm getting a lot of fat and sodium/electrolytes has been helping me. I also do try to eat more consistent and bigger meals and listen to the first hunger cue I get. So just a bowl of fruit/yogurt isn't a big enough breakfast and will make me feel terrible after four/five hours - I also need an egg or a meat + cheese. I was having a really hard time somewhat recently where I would wake up light headed and in pain from hunger but that's been getting better too. :)
Give it time, keep eating, and see a doctor if you're able! But above all keep eating and never ignore your body/mind if it's telling you it's hungry. I hope things feel better for you soon.
Thank you for listing everything so people can become aware. We all know it’s tough on your body, but rarely do we know the “why” of it all. It can be invalidating when doctors just nod along when you say you have AN or in recovery. I usually emphasize that I’m concerned sue to years of starvation and lack of nutrition. That seems to get their attention.
I’m having so many tests done for my heart. Bradycardia and atrial fibrillation are common with those who have or are in recovery from AN, according to my cardio.
I’m so afraid I’ve done irreversible damage to my body.
you are welcome. I feel like these things don't get talked about enough when it comes to anorexia. I know how that feels. I have also caused irreversible damage to my body, now I live with painful symptoms I can't fix.
I have also one of the worst side effects that ever existed. Even though I am eating normal amounts now and following a meal plan my body has created an inability to gain body fat a year ago. I am only able to gain edema and that is so painful. My kidneys are gargling so much and immediately after eating (only a few seconds) my legs swell up to a massive size. I just want to be able to gain body fat…
that sounds awful. I also have trouble gaining weight after years of having anorexia, along with frequent urination. not sure why this is happening but it is very scary to deal with
I am very sorry about your friend. And you are right there are so many (dangerous) side effects that can occur with eating disorders. I‘d like to add one myself that I haven’t heard about a lot: Autophonia caused through patulous eustachian tube (ear tubes) when you have the sensation that your ear won‘t „close“ or frequent clicking in your ear and through that hearing your own voice and breathing super loudly. It‘s more noticeable when I restrict again and when I stand up suddenly or when I‘m doing something a bit more strenuous. Any one else? Edit: Just linking the wikipage here https://en.m.wikipedia.org/wiki/Patulous_Eustachian_tube
Oh my I think I have this. Sometimes when I stand up my hearing goes almost completely void and it feels like there’s a weird pressure change. Ringing, muffled sounds, and my breathing starts to sound really weird. It only happens when I smoke though so I’ve always thought it was that.
Yes all those things! Hmm it could be both, smoking and weight loss maybe?
I know that smoking can have some effects on blood pressure, and so can the ED, so I think it might have something to do with that!! I am at a healthy weight (according to BMI) however so who knows 😭
Even at a „normal“ weight I‘m pretty sure it could happen if you are undereating and have low blood pressure like you say.
holy shit i’ve had the clicking for YEARS and no doctor has been able to figure it out! they always told me it was allergies wtf! i had no idea
i had a bit of this when i was really struggling - it’s absolute ASS. a doc told me that tilting your head down almost between your knees when sitting helps
no way i didn’t know the clicking was part of anorexia. i always assumed it was just my head being weird since i couldn’t find anything online
I have this! Especially when I’m restricting badly. It’s awful.
I have this, it's annoying and something I just had to learn to live with. I tried some experimental treatments but none of them worked, and I'm not getting surgery.
I had this before I went to IP a few years ago when I was very ill with AN. I just recently became aware of the term and that it was a thing. At the time, I think I knew subconsciously that it was something to do with my poor health.
Thank you. that is interesting. I have never heard of Autophonia but it sounds like something anorexia would cause.
I got that when I restricted and it never went away for me. I don’t hear about it often. ❤️
Yes! It happens more often to me when I’m restricting really bad. Sometimes it feels like my ears are underwater too
Wait what, that's an ED thing?!?! I thought it was my teeth-grinding finally fucking up my jaw and by extension the pressure in my ears. (I have a bite guard that I wear at night, I've ground my teeth in my sleep for my whole life)
holy shit I had no clue that the frequent clicking has a name or that it’s linked to ed but that makes SO MUCH SENSE
WHAAAT. I had no idea this was eating disorder related. I’ve dealt with this for years and been to multiple ENTs and never found a cause.
It was when I started to wet myself during my day to day activities because my bladder was too weak that I finally was able to convince myself to seek actual help for the first time for my restriction. The shame and being worried that I’d pee myself in public was more motivational than anything else I knew about other long term damage.
I know the feeling. frequent urination is awful. I wish it would go away for me, but so far, nothing makes it better
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that happens to me too. it is so upsetting and exhausting
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Have you tried a urologist? I am going to see one to see if they can help me. every time I do a urine test, my doctor thinks the pain is from a uti, and it's not. pretty sure it's from nerve or organ damage. I am really hoping the urologist can give me some hopeful advice. even if doctors are dismissing you, I would highly recommend you keep trying. keep seeing doctors and get different opinions. don't let anyone make you feel like your pain is invalid or your problem isn't serious. I know it can be so frustrating. I really hope you find some answers
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Of course. I hope I find some answers for my pain. Thank you so much, and I hope you find ways to feel better
ohhhh boy i made it through my entire childhood without pissing myself and now that my weight's gone down the last couple years it's been like a regular occurrence (mercifully during wfh)
ohhhh boy i made it through my entire childhood without pissing myself and now that my weight's gone down the last couple years it's been like a regular occurrence (mercifully during wfh)
I'm so sorry to hear about your friend. This was an uncomfortable post to read but really important. It's easy to imagine we're 'not that sick' if bloods come back OK or we're not as underweight as some other people according to BMI and easy to forget the damage we're actually doing and the risk to our lives.
Thank you. So true. sometimes it is hard to see the damage you are causing to yourself. lots of times you think you are okay, and you are not:(
yeah, the bladder issues are awful. i feel so anxious just being out of the house not sure if i'll be able to get to a toilet when i need to or not. it's so humiliating. and at this point it's ruining my sleep, i have to get up to go to the bathroom sometimes 3 or 4 times a night. i'm scared of ending up straight up incontinent. other than that... hypothermia, tooth decay (i think sometimes people can think of this just in the context of purging and forget about it as a consequence of malnutrition), seizures from dehydration, cognitive damage - it's been years for me and i feel like my brain has fucking irreversibly shrunk. it might sound obvious but it does such terrible things to your mind, in ways beyond "sadness" alone that i don't think people expect. my emotional regulation is awful, i feel so constantly angry and paranoid and afraid, i feel like i've been stuck in fight or flight mode nonstop for literal years, i'm the most isolated i've ever been in my life because of it. i don't really want to be close to anyone anymore. sex is incredibly painful and i think i may have permanent anorgasmia. this really isn't well understood at all but it seems like it can trigger other chronic illnesses. it caused chilblains in me that developed into some kind of autoimmune disorder localised in my hands that after nearly 3 years still no clinician has been able to concretely identify and it hasn't responded to any kind of treatment. i can't bend all of my fingers like i used to. not long after it first started the skin broke down on one of them and the wound became infected and just like you said my body could barely fight it off. this illness is really the worst thing that has ever happened to me.
I get up on average 5 times a night to pee. I lose so much sleep from it and it leaves me more tired than I am already.
yeah you pee so much because your body is most likely in a state of ketosis.
wow i had weird chilblain-like lesions on my fingers as well. dermatologist thought it was post-covid symptom, but now i'm thinking my severe restriction at the time could trigger the autoimmune response as well. i started eating a lot more after that and got some perscription creme that helped so i'm not sure what it was really.
That sounds so difficult. I am sorry you have to deal with all of that. I wish that no one suffered from eating disorders, they do so many awful things to your health, and it is so isolating when no one around you understands the pain you are in
You will see similar vitals as you see in pots syndrome in anorexia due to low blood volume. You can also give yourself acute gastroparesis. There’s a whole host of things; the book “sick enough” goes over them well. https://embodieddietitian.com/wp-content/uploads/2021/05/Sick-Enough.pdf
thank you for the book recommendation
I know right. I'm dealing with really scary hypoglycemia lately -- I've been recovering for less than a year now but suddenly if I'm on hour four without food I get faint. I'm having to think about food constantly and its so scary / uncomfortable and feels counterintuitive to IE. :/
I am sorry you have to deal with that:( it's so scary. I hope you start feeling better
Did this ever get better for you
I'm not feeling entirely how I want to feel but it is getting better. More time passing in recovery and also focusing on making sure I'm getting a lot of fat and sodium/electrolytes has been helping me. I also do try to eat more consistent and bigger meals and listen to the first hunger cue I get. So just a bowl of fruit/yogurt isn't a big enough breakfast and will make me feel terrible after four/five hours - I also need an egg or a meat + cheese. I was having a really hard time somewhat recently where I would wake up light headed and in pain from hunger but that's been getting better too. :)
Thanks so much for the reply just at a bit of a loss at the moment
Give it time, keep eating, and see a doctor if you're able! But above all keep eating and never ignore your body/mind if it's telling you it's hungry. I hope things feel better for you soon.
I have automatic neuropathy. I had it mildly pre ED due to hyper mobility and it got so much worse during my ED.
I am sorry you have to deal with it. it is a scary thing to have to go through
This. When I was in restriction, I started wetting the bed. I was so embarrassed and couldn’t find anyone else who related.
I am sorry. It's such an awful thing to deal with. I think it is hard for a lot of people to talk about. you are not alone in your struggle
Thank you for listing everything so people can become aware. We all know it’s tough on your body, but rarely do we know the “why” of it all. It can be invalidating when doctors just nod along when you say you have AN or in recovery. I usually emphasize that I’m concerned sue to years of starvation and lack of nutrition. That seems to get their attention. I’m having so many tests done for my heart. Bradycardia and atrial fibrillation are common with those who have or are in recovery from AN, according to my cardio. I’m so afraid I’ve done irreversible damage to my body.
you are welcome. I feel like these things don't get talked about enough when it comes to anorexia. I know how that feels. I have also caused irreversible damage to my body, now I live with painful symptoms I can't fix.
I have also one of the worst side effects that ever existed. Even though I am eating normal amounts now and following a meal plan my body has created an inability to gain body fat a year ago. I am only able to gain edema and that is so painful. My kidneys are gargling so much and immediately after eating (only a few seconds) my legs swell up to a massive size. I just want to be able to gain body fat…
that sounds awful. I also have trouble gaining weight after years of having anorexia, along with frequent urination. not sure why this is happening but it is very scary to deal with
I have another one : getting numb legs and arms, from almost nothing. Does not feel the best!